Reverse to incontinent from Kock Pouch

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HEAVENLYHANAINN
Posts: 11
Joined: 2010-03-19 11:39:37

Reverse to incontinent from Kock Pouch

Post by HEAVENLYHANAINN »

I have had an ileostomy for 49 years. 6 1/2 incontinent originally. Converted to a Kock pouch and have had 3 revisions. 2nd one did not work. In the past 2 years I have had 5 surgeries and looking at my next on Dec 13th for a Hernia that has recurred for the 3rd time. The surgeon suggests that I convert back to an incontinent. My husband still want to keep the Kock Pouch. I am having problems inserting the catheter. Any suggestions from anyone. Thank you for listening.
daisymay5
Posts: 4
Joined: 2011-03-06 17:14:58

Re: Reverse to incontinent from Kock Pouch

Post by daisymay5 »

Hello, I'm searching to see if anyone had their Koch pouch converted to an (end) permanent ileostomy and what their experience has been? i have had my pouch for almost 40 years but now have more serious stricturing/narrowing problems. I've been advised to have surgery to convert before it becomes an emergency situation--which no one can say when that will be. Although I'm hesitant, I've been concerned about this for the last few years. A few years ago a scope was tried but was unsuccessful to do. I'll be having an MRI to see if that can help with seeing anything, but there is no guarantee it will show or results will be read in terms of seeing issues with the pouch since it is so rare. I know it will be an adjustment to go back to wearing a bag again after so long--I had my original ileostomy for only 18 months prior. Any feedback from those who have gone through this surgery will be appreciated.
BillV
Posts: 120
Joined: 2013-11-11 21:24:03

Re: Reverse to incontinent from Kock Pouch

Post by BillV »

It would be sad to revert to an end ileostomy if there was a chance that your K pouch could be repaired to correct the problems that you are experiencing. I strongly recommend that you have a consultation with a surgeon who has lots of experience in dealing with K pouch complications. Three surgeons who have received a number of positive reviews on two other FB groups (“Kock & BCIR Continent Pouchers United” and “BCIR and Related Continent Pouches”) are Dr. Kiran (New York), Dr Ashburn (North Carolina) and Dr. Dietz (Ohio). Their contact information is shown on a listing with this link: https://qla-ostomy.org/medical-info-par ... -ostomies/

A significant number of doctors have negative feelings about continent pouches and routinely recommend permanent ileostomies when a K pouch could be a more appropriate choice in light of the individual patient’s situation. I published an article entitled, “Researching my Options” several years ago in UOAA’s magazine, The Phoenix, that contains information that might be helpful in dealing with your situation.. The link is: https://secureservercdn.net/198.71.233. ... ions-1.pdf

I recommend that you consider joining one or both of the Facebook groups I mentioned earlier. You should then get additional input from members who have been faced with your situation. Best of luck in whatever you decide to do.
daisymay5
Posts: 4
Joined: 2011-03-06 17:14:58

Re: Reverse to incontinent from Kock Pouch

Post by daisymay5 »

Thank you BillV, your information is much appreciated and I will look into these resources.
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